Apart from our own death 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 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 ones death is like sitting on a time bomb, knowing it is going to go off and being powerless to stop it. 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. Knowing that I would need to understand more about his disease and the pain and symptoms associated with it in order to achieve this, I sought knowledge regarding the stages of his disease, 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 for 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 of the fear, pain and discomfort he would otherwise have suffered. 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. Experience has taught me that knowledge is the key to better quality of life for the terminally ill. I believe that loved ones are far more likely to be cared for at home, if the carer has a clear understanding of the progression of the disease and knowledge regarding the management of pain and symptoms. All patients and their carer's should be encouraged to talk to their doctors about the progressive symptoms of their disease, so that informed choices can be made regarding available treatment and medications. It is important for health professionals to realize and support a family's need to maintain some control over their lives, this removes their sense of helplessness, gives them purpose and helps them to cope with the anticipatory grief associated with terminal diagnosis. Testament to the pain and symptom management we achieved; despite his prognosis of three to nine months, Brian survived for two years during which he stayed active and alert, drove his car for eighteen months after diagnosis, continued to go fishing which was the passion of his life and was not bed bound until three short days prior to his death. As was our wish, he passed away at home surrounded and supported by all of his loved ones. I have found much peace in the knowledge that I made a difference to the quality of his life and it has given me the strength to go on with my life. |
