Caring For a Terminally Ill Loved One
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, 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, testament to the vows Brian and I pledged to each other on our wedding day, May 17th,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, and studied the pain and symptoms he would experience as it progressed and ways by which to manage them. I learned a lot and 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, wheelchair etc – on hand before Brian needed them. This alleviated much fear, pain and discomfort. My knowledge regarding pain management and symptom control, enabled me to take an active role in his care, working hand in hand with his doctors to obtain for 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 a situation where they are chasing the pain instead of being in front of it. Untreated chronic and debilitating pain kills. It 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.
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 tumour. 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 any means of prolonging that hope he grasped with both hands.
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 their 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 have 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 have remained strong and I believe I am helping Brian to die well, just as I have helped him to live for these past two years. It comforts me that he is not afraid of dying. He knows that his long courageous battle is almost over; he has accepted it and is 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.
Take a look at your life. How would you describe it? Contented? Rushed? Exciting? Stressful? Moving forward? Holding back? For many of us it’s all of the above at times. There are things we dream of doing one day, there are things we wish we could forget. In the Bible, it says that Jesus came to make all things new. What would your life look like if you could start over with a clean slate?
Living with hope
If you are looking for peace, there is a way to balance your life. No one can be perfect, or have a perfect life. But every one of us has the opportunity to experience perfect grace through a personal relationship with God through His Son, Jesus Christ.
You can receive Christ right now by faith through prayer. Praying is simply talking to God. God knows your heart and is not so concerned with your words as He is with the attitude of your heart. Here’s a suggested prayer:
Lord Jesus, I want to know you personally. Thank you for dying on the cross for my sins. I open the door of my life to you and ask you to come in as my Savior and Lord. Take control of my life. Thank you for forgiving my sins and giving me eternal life. Make me the kind of person you want me to be.
Does this prayer express the desire of your heart? You can pray it right now, and Jesus Christ will come into your life, just as He promised.
Is this the life for you?
If you invited Christ into your life, thank God often that He is in your life, that He will never leave you and that you have eternal life. As you learn more about your relationship with God, and how much He loves you, you’ll experience life to the fullest.