Apart from our own dying experience, we will never be closer to, or understand more, the process of dying than when we are the carer of a fellow human being with a terminal illness. Most often it is our loved one who we will be caring for, making the task even more overwhelming. To constantly bear witness to the ravages of the disease, knowing that you are powerless to stop its progression, is a huge burden.
Caring for the terminally ill brings many challenges. It will test you, humble you, reward you and painfully remind you of the fragility of life, the strong and mysterious flame that burns within us that can suddenly be blown out like a candle in the wind.
When my husband Brian received his diagnosis, my worst nightmare became reality. He had pleural mesothelioma, a terminal cancer of the lung caused by the inhalation of asbestos dust. We were still reeling from the shock when, without preamble, the young doctor gave his prognosis. His exact words were, “Three to nine months, I reckon”. That he could say this so unfeelingly amazed me. His total lack of compassion did not encourage even the small comfort of tears. I felt as if Brian and I had been shot and from that moment on we were waiting to drop.
Undoubtedly, we were mortally wounded. We suffered shock, disbelief, anger, helplessness and utter despair; in fact all the symptoms of grief one feels when a loved one has actually died.
As the disease progressed Brian began to experience severe pain, partly due to the fluid which continued to accumulate, placing great strain on his organs. I felt like I was drowning; his prognosis was always on my mind; I came to dread the beginning of each month, knowing that our time together was running out. I felt as if I had fallen off the planet, my distress intensified by the reaction of our friends and acquaintances, who were shocked over our tragic circumstances, and not knowing what to say or how to act, avoided us.
At the local club, instead of the enthusiastic welcome we were accustomed to, we were greeted with silence, whispers or exaggerated attempts at joviality. It was as if we had lost our identity. They no longer saw us as Brian and Lorraine; we had become the objects of pity, a sad reminder to all of the fragility of life.
Throughout the course of our married life, this of 32 years, my deep love for Brian and my determination to resolve difficulties had seen us through many trials. I found it hard to believe that nothing could be done to save his life and begun surfing the Internet for information regarding mesothelioma, all the time praying for a miracle, hoping against hope to find a doctor who had successfully operated on or cured someone of it.
It was a sad realisation to discover that for Brian there were no miracles; however, I learned a lot and it helped me to accept that he was dying. This in no way made it easier to bear; we all must die but nothing can portray the anguish of knowing when. Living in expectation of Brian’s death had a catastrophic effect on all of our lives.
Needing to express the depth of my love, I wrote Brian a letter telling him that although we had never won a lottery, we were rich in the wealth of love we shared and that I had always been happy knowing that he loved me. I thanked him for being a loving, hardworking and loyal husband, and for providing all the material things I had ever wanted. Added to this, I promised that he would not suffer unnecessary pain or die in hospital. With the letter I gave him the poem, “Loving You”, which was the first of many I wrote throughout our journey to his death and beyond. I came to think of these poems as my “teardrops”, so many of them fell during their creation.
With no way of knowing how long Brian would survive, I saw every symptom he experienced as an indication of his impending death. I began to feel tightness in my chest, often became short of breath, and groaned involuntarily. I needed my family and, after weeks of repressing my anxiety, I told Brian that I wanted to move to Perth. His reaction was explosive. He said, “You are wallowing in self pity!” His words wounded me deeply, causing my pent-up emotions to burst from me and I totally lost control. I threw every thing I could lay my hands on around the room and screamed until I could scream no longer. Finally, exhausted, I fell to the floor and sobbed. Brian came to me; he had not meant to hurt me. I understood and forgave him.
I wished there was someone I could talk to, but I had nowhere to turn. My children were trying to come to terms with their own grief and it upset them if I made any mention of their father’s deterioration. At times I felt that I was the only one who believed he was dying. Upon my doctor’s advice, I purchased an exercise book and begun keeping a diary, in which I wrote daily, often in the form of poetry. This became my strongest coping tool, my own personal counselor, and it never judged me.
I was determined to walk beside Brian on the journey to the end of his life, and to keep the promises I had made, but I needed to know what he was experiencing and what I could do to alleviate his suffering. Once again I surfed the Internet, this time to find out about pain. I then made the first of many appointments with Brian’s doctor where we discussed this and the drugs, which were available to manage it.
It is hard when people are always watching us to see how we are coping. I try to behave normally, but then I think, how can I be normal? Brian is dying. Sometimes when we are with friends, he laughs and I am happy for him. But if I laugh, I feel guilty. I have no right to laugh or to feel normal so I deliberately make myself sad by looking at Brian and reminding myself that I am losing him. Last night one of the ladies said to me. “You are such a strong woman”. What makes her think that? I don’t feel strong; I am trying to appear strong for Brian but inside I am breaking.
In an attempt to defy his illness, Brian often pushed himself to the limit, resulting in pain for him and distress for me. I began watching him to make sure he didn’t hurt himself. My constant pleading for him to take it easy, sit back in his chair, put his swollen feet up, irritated him, and on occasion, he would snap at me. His comments hurt, and angered me. They were undeserved, but I repressed my anger along with my sadness, loneliness, and fear because he was dying. There were several occasions, however, when I lost control; only at these times did I allow myself to sink into the true depths of my despair. I knew he never wished to hurt me; he was just trying to live. I came to understand that I had to allow him to do whatever he felt capable of doing. Sometimes his resulting pain took several hours to bring under control.
I continued to seek knowledge and became aware of the symptoms Brian would experience as the disease progressed; this and my understanding of pain and its management was to have a huge impact on the quality of his life - and mine. As my efforts continued to ease his suffering, I realised that although I could not save him from dying, I could help him to live. This removed my feelings of helplessness and gave me strength.
I have read a lot about caring for a cancer patient and it amazes me that I am already doing all the things they recommend. I am proud of what I have achieved on my own. It means a lot to Brian that I am able to help him. Without the things I have learned on the Internet, I would not be able to work with the doctor and the chemist to ease his pain. I must find out who I can ring if something happens at night; I need to know that someone will be there for me …
Oh for the joy of sleeping peacefully and waking with a light heart
Oh for the time when there were no tears
When laughter was not out of place and smiles came easy
Tomorrow is the day of Brian’s funeral; I have planned each step with the same calm that has prevailed since he died. But now that all the planning is done, I feel strange. I look at his wheelchair and the oxygen compressor, now on the front porch waiting to be collected, and I can so clearly see him, determined to enjoy his life even though all the things he loved except for his family, had been taken from him. I see myself too, standing behind him, protecting him, loving him, determined to help him live and to help him die when the time came .I will always be proud of the strength and courage I found, which enabled me to ease Brian’s journey. The knowledge that I was making a difference, held me up even in my darkest hours.