Patient denial places added burden on caregivers.
My husband passed away almost five months ago, and I’m angry with him.
Scott lost his eight-month battle with an aggressive, undifferentiated form of sarcoma—he had just turned 38. After the initial shock of his diagnosis and the news that his spinal tumor had already spread to his lungs, liver, bones, bone marrow, and brain, I immediately understood there was only one ending to this story, and we would not be able to spend our lifetimes together to raise our two young children as planned.
Early on, Scott looked through my teary eyes and said, “I know you know, but don’t tell me.” And thus the denial began.
Scott was reluctant to talk about getting a will or medical power of attorney back in September 2007 when he was diagnosed. He saw contacting an attorney as confessing his impending death, even though I was preparing my own will at the same time. He died less than one month after signing the forms. I am upset with Scott for almost leaving me financially unprepared.
Scott imagined he had more time to take care of his personal affairs. I encouraged him to write letters to the kids for their graduation, first day of college, wedding day, first child—any moment when he could have conveyed his innermost wishes and dreams for them. But he delayed day after day because writing down such thoughts was the ultimate admission that he would not be saying those words in person to his grown children.
Now I have the daunting task of being Scott’s mouthpiece and relaying my impressions of his personal hopes and desires for our children. At this moment, that responsibility feels hefty, but I hope with time I am strong enough to lift it up for Scott and our kids. I am upset with Scott for not communicating with our children directly.
Scott and I did not discuss the future and the reality that our life journeys were about to diverge onto separate paths. I was terrified of being left behind, a young widow alone to raise two young kids. Could I endure it? Was I strong enough? Who would be there to support me emotionally?
We were supposed to be life partners, going to soccer games and ballet recitals, standing proudly when our kids succeeded and comforting them when they did not, becoming grandparents together. We wanted to travel the world to share new adventures; now there was no more time.
During Scott’s illness, I longed to share these thoughts and doubts with him. I was scared and needed my husband’s comfort and reassurance. But because of the denial, we could not face the future together. So each day I cared for him, standing beside the bed, trapped alone with my fears. I am upset with Scott for leaving me.
Scott smiled at me at sunset one day as the kids scurried from the car into the house to greet our dog. I paused and smiled back, and amid our silence, the breeze carried the meaning behind his smile into my heart: “You are strong. You can do this. You will endure. I will support your spirit. Kiss our children for me every day. I love you.”
This is not the ending I imagined, but it gives me some sense of permission to move forward in life. I am strong and I will endure for our children and for Scott.
—Tara Beers Gibson, PhD, serves as a scientific adviser for CURE and an associate director of scientific affairs at Physicians’ Education Resource.