Caring for a terminally ill loved one is overwhelming. To constantly bear witness to the ravages of the disease knowing you are powerless to stop it is a huge burden. We want and need to do something to help them but don’t know where to start. We refuse to believe that there is nothing that can save them and search for miracles only to find that there are none.
In time we come to accept that they are dying and begin grieving for the loss of them in our lives. Our grief is compounded by our sense of helplessness. There are so many frightening and unanswered questions. What is going to happen? When will it happen? Will there be much pain? Living in expectation of a loved one’s death is like sitting on a time bomb, knowing it is going to go off and being powerless to stop it.
The two year journey of my husband Brian’s diagnosis with terminal cancer has taught me many things. Above all, it has taught me the true meaning of love and the strength of the human spirit. As I witnessed his incredible courage, it brought forth in me a fierce determination to ease his journey. Ours is a story of love and devotion, a testament to the vows Brian and I pledged to each other on our wedding day, May 17, 1969. “In sickness and in health, until death us do part.” We meant every word.
I could not stop my husband from dying, but I could help him live
My acceptance of my husband’s impending death came with a fierce determination to help him achieve quality of life for the remainder of his days. I knew that I needed to understand more about his disease in order to help him, so I sought knowledge. I asked questions about his disease, studied the pain and symptoms he would experience as it progressed, and learned ways to manage them. Through this I came to realize, that although I could not stop my husband from dying, I could help him to live.
My knowledge allowed me to be one step ahead of the disease progression and gave me the opportunity to have medication — and later, physical aids such as oxygen and a wheelchair – on hand before Brian needed them. This alleviated much of the fear, pain and discomfort. My knowledge regarding pain management and symptom control enabled me to take an active role in his care. I worked hand in hand with his doctors to give him a quality of life few thought possible considering the nature of his disease.
Get the help you need to manage the pain
Whilst the majority of cancer patients do experience chronic pain, only a small percentage of them have adequate pain relief. This is often due to the common belief that large doses of medication, such as morphine and methadone (used for pain control in lung cancer sufferers), will sedate them and prevent them from functioning normally. Sadly many people suffer unnecessarily due to this misconception.
The object of pain management is to always be in front of the pain. Good communication with your loved one is imperative; so too is their honesty in relating to you the nature and intensity of their pain. Encourage them not to brave it out by letting it reach debilitating levels before asking for relief. This results in chasing the pain instead of being in front of it. Untreated chronic and debilitating pain kills the will to live.
Despite his illness, there were times when Brian felt well and these were spent in the pursuit of his hobby, his passion, his true enjoyment in life — fishing. I always had a supply of his medicine on hand so that I could keep him out of pain no matter how long we spent on the water. I constantly marvelled at his ability to keep pulling in fish despite his lack of strength. I believe his love of fishing transcended any pain, weakness, or discomfort he experienced. For him, at these times, there was no thought of sickness and death. For me, watching him, loving him — the thought of death was always on my mind.
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Deciding about chemotherapy
In time, Brian’s condition worsened until he could not even drink water. Dilatations were no longer an option and he was offered palliative chemotherapy to shrink the tumor. It was the only hope of prolonging his life.
Like many before him, Brian had vowed that he would not undergo chemotherapy. Having heard stories of chronic fatigue, nausea, and hair loss he was fearful of the treatment. But there is a lot of truth in the adage, “You never know, until it happens to you.” For Brian, where there was life, there was hope, and he grasped with both hands any means of prolonging that hope.
Palliative care (symptom control)
Despite a terminal diagnosis, there is still life, and survival may range from months to several years. Many people believe that palliative care is intended only for the end of life, and do not seek this help until the final stages of terminal illness. Due to this unfortunate belief the quality of life that could have been achieved through their services is not realized.
The Palliative Care Team, consisting of pain management specialists, nurses, doctors, chaplains and volunteers, work together to provide the best possible pain and symptom control for the patient, whilst at the same time offering physical and emotional support to their families. I believe the services of these wonderful people should be embraced from the time of terminal diagnosis. Had Brian been in their care sooner, much of his suffering — and mine — would have been alleviated.
Our journey’s end
We had spoken of death. I asked Brian if he was frightened and he said, “No, it will be nice to sleep.” We spoke of his parents and the hope that they would be waiting for him. When he asked me about his funeral, I told him of my plans for a seaside memorial. He was pleased with my decision. I remained strong and I believed I helpied Brian to die well, just as I helped him to live the last two years. It comforts me that he was not afraid of dying. He knew that his long courageous battle was almost over. He accepted it and was at peace.
Brian and I travelled many miles on our last journey together — miles of emotions, spirits, courage and strength. I thanked God for granting me the courage and the strength to walk beside him to his life’s end, and for the peace I found in the knowledge that I definitely made a difference.
For more information about cancer please visit the Canadian Cancer Society or the American Cancer Society for a list of resources in your area.
This article was written by: Lorraine KemberPhoto Credit: Josh Appel