What I Learned About Mesothelioma Caregiving and Terminal Illness
May 7, 2019
At 49, I was feeling pretty content with my life.
Happily married to my husband Brian for more than 30 years, I was successfully running my own retail business in Exmouth and enjoying the laid-back lifestyle of northern Western Australia.
In those happy days, if anyone had asked me what I thought I would be doing when I turned 50, I would have answered, “Exactly what I am doing right now; why would I want to change what makes me so happy?”
Eight months shy of my 50th birthday, I learned I was soon to become a widow. Brian was diagnosed with pleural mesothelioma at 52 and was not expected to live for more than a year.
There was nothing that could have prepared me for this devastating news.
As I struggled to deal with the shock and sadness that overwhelmed me, my heart ached for Brian. How was he coping with the situation?
I could not imagine what it would be like to be told I was dying.
Truly Living Until His Death
Fearing I would not be able to cope with Brian’s illness and death on my own, I wanted to relocate to Perth, where I could be near my family and the support of cancer organizations. Brian, however, wished to remain in Exmouth, and I could not refuse him.
Reluctant to spend one precious moment away from his side, I put my business up for sale.
For months after his diagnosis, Brian did not appear sick and was able to carry on with his life as normal.
Apart from having fluid drained from his lungs on a regular basis, he had no other symptoms of mesothelioma and was not experiencing any pain. Although this was a blessing, it made it more difficult for me to believe that he was dying.
Regardless, his prognosis of three to nine months was always on my mind. After three months, I thought I might lose him at any moment. I would not let him out of my sight because I feared he would die without giving me the chance to say goodbye.
When Brian was still very much alive after nine months, we both breathed a huge sigh of relief. No longer faced with a countdown to death, we welcomed each new day without dread.
As it turned out, Brian lived with mesothelioma for two years.
These precious last years were about far more than just survival. Thanks to my success in keeping his pain under control and his zest for life despite his terminal illness, he truly lived until he died.
Terminally Ill People Don’t Want to Be Overprotected
The most profound thing I learned while caregiving for Brian was that despite being terminally ill, he was still very much alive and determined to carry on with his life as normal.
All he ever asked was that friends and family continue to interact with him in the same way as they always had.
From the moment Brian was diagnosed, I became very protective of him, particularly when it came to keeping him out of pain.
While the pain management routine I put into place was successful in keeping his pain to a minimum, there were times when he overexerted himself.
To prevent this from happening, I rushed in to take over the physical tasks he usually handled. He did not appreciate my actions and told me so. Though it hurt to be chastised for trying to help him, I came to understand my actions were making him feel useless.
Since this was the last thing I wanted to do, I learned to stand back and let him do whatever he set his mind to. Sometimes it took hours to bring his pain back under control.
No One Wants to Be Sad All of the Time
Despite his terminal illness, Brian never lost his sense of humor and would enjoy a good joke even on the most trying of days.
Although I was often lost in sadness, his laughter always lifted my spirits. In time I learned to put my sadness aside and laugh along with him.
Apart from putting his affairs in order shortly after his diagnosis, Brian never mentioned dying.
He often talked about what he was going to do when he got better. Knowing this would never happen broke my heart, but I always agreed with him because I knew that without hope, life — no matter how long — had no meaning.
Talking About Death Can be Comforting
Three days before Brian died, he asked me how many Christmases had passed since his diagnosis.
The question was especially poignant because he loved this time of year. Since it was just days away from Christmas, I said three.
“I don’t think I will make another one,” he replied.
Although I was saddened by his comment, it was comforting to know that he had accepted his fate and was at peace with it.
We talked about his parents, whom he hoped he would find waiting for him. When Brian asked about his funeral, I told him my thoughts for a seaside memorial in honor of his love for the sea.
It meant the world to me when he approved of the idea.
I am so grateful for the conversation we had that day and for Brian’s reply when I asked, “Are you frightened of dying?”
“No,” he said. “It will be nice to sleep.”
The peace I felt when hearing this remains with me to this day.