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Posted: April 11, 2005

Practical Caregiving

Sitting on a Time Bomb: Caregiving for a Dying Loved One

Lorraine Kember contacted me recently from her native Australia with the story of her caregiving for her husband, Brian, after he was diagnosed with mesothelioma, a cancer that is caused by inhalation of asbestos dust.

Once she accepted the fact that there was no cure and that he would die, she came to the realization that she needed to do everything she could to improve the time he had left. She wanted to help him live a fulfilled life as long as possible.

I thought you might be interested in reading her story in her own words rather than my telling you about it:

My husband, Brian, was an incredibly strong and virile man who rarely experienced a sick day in his life. When, at the age of 52, he suddenly began to experience periods of shortness of breath, we thought he most likely had a chest infection. We made a doctor's appointment, expecting that he would be given a course of antibiotics. Instead, Brian was given a death sentence.

X-rays revealed that his shortness of breath was due to a large amount of fluid accumulated in his lungs -- more than two liters of which was drained and sent for pathology. Cancer cells were found to be present, and further tests revealed that he had pleural mesothelioma. This was a result of his inhalation of asbestos dust as a small child, some 45 years earlier.

There is nothing that can prepare you for the shock and devastation of a terminal diagnosis. Brian's was delivered in a somewhat brutal manner by a young doctor whose exact words were, .Mesothelioma -- 3 to 9 months, I reckon.. Upon hearing these words, I felt as if Brian and I had been shot, and I saw his prognosis as a time in which we were both expected to drop. Certainly Brian was mortally wounded, and I -- who loved him completely, my life so entwined with his -- felt as if I, too, had received a death sentence.

With no idea of what to expect, I feared he might die at any time. I saw any symptom he displayed as a sign of his imminent death. I was reluctant to let him out of my sight for fear he would not return to me. I had trouble sleeping due to my fear that I would wake up to find he had died.

My turmoil was intensified by the reaction of our friends who, not knowing what to do or say, avoided us. At our local club, instead of the enthusiastic welcome we were accustomed to, we were greeted with silence 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 remainder to all of the fragility of life.

I found it hard to believe that there was nothing I could do to save Brian's life and began surfing the Internet for any information on his disease -- all the while praying for a miracle and hoping to find someone, somewhere, who had cured someone of it. Sadly for Brian, I found that there were no miracles. But the knowledge I acquired regarding his disease helped me accept that he was dying. This in no way made it easier to bear. Living in expectation of death is like sitting on a time bomb, knowing it is going to go off, and being powerless to stop it.

As I lived in expectation of my husband's death, my anticipatory grief caused me to experience many of the symptoms of grief one experiences when a loved one has actually died. Certainly there was shock, denial, anger, acceptance, hopelessness and utter despair. My doctor did not prescribe antidepressants to help me to cope with the roller coaster of my emotions. Instead he advised that I see a counselor on a regular basis and that I begin writing in a personal diary. His advice was sound. The diary I began on that day became my strongest coping tool. I wrote in it daily, pouring my heartache and fear onto the pages.

Not long after Brian's diagnosis, I observed-that despite his medication, he was in considerable pain. Once again I turned to the Internet to learn about the progressive symptoms of his disease, the pain he would experience and ways by which to control it. I learned that there are different types of pain and that not all pain responds to the same medication. I also learned how to measure intensity of pain and encouraged Brian to communicate to me the type of pain he was experiencing and its intensity, using a pain scale of 0 to 10. Brian soon realized the benefits of this. It was an immense relief for him to know that I understood what he was experiencing and, more importantly, that I could do something about it.

In time, as my knowledge grew, I came to realize that many of Brian's symptoms did not necessarily indicate that he faced imminent death. My understanding of the expected stages and symptoms of his disease allowed for me to be one step ahead of its progression. In this way, I was able to deal with the changes emotionally before they happened and be strong for Brian when he needed me most.

Due to the nature of Brian's disease, and the symptoms it presented, it was a never-ending battle to ease his suffering. Keeping him out of pain became the reason for my existence, but despite my efforts there were times when his pain broke through. I have no doubt, however, that my continual quest to bring his pain and symptoms into control greatly improved the quality of his life. Brian remained active and alert, drove his car for 18 months after diagnosis and up until a few months prior to his death, and was able to enjoy his hobby (his true passion in life) fishing.

My experience has taught me that knowledge is the key to improved quality of life, not only for the terminal patient, but also for those who care for them. Better understanding of the complexities of the disease and the pain and symptoms arising from it enabled me to take an active role in the physical care of my husband. The ability to work with the doctors in this way removed my sense of helplessness, and as my continual efforts to ease Brian's burden resulted in his improved quality of life, I gained strength.

Lorraine Kember has written and self-published a book on her experiences in caregiving. It is titled Lean on Me -- Cancer through a Carer's Eyes. You can learn more about Lorraine, her life and her book at herwebsite. Lorraine currently is studying to become a grief counselor and gives speeches to various organizations and seminars.

Click here if you would like more information on mesothelioma.

© 2005 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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