Caregivers regret angry words born of frustration

Not long after Mary Gemmill's husband, who already had chronic obstructive pulmonary disease, learned he also had lung cancer, she had one of those caregiver meltdown moments that people don't talk much about.

She caught her husband hiding cigarettes, and she exploded. A retired nurse, she knew he was going to die - the death came two months after his diagnosis - and it didn't really matter much whether he smoked. But she also knew his addiction to cigarettes had made him sick in the first place.

"We had World War III. And now, of course, I feel so bad because I look back, I was so nasty," said Gemmill, 72. The couple were married 47 years. "It was everything coming in on me. Here he is, he's so sick he can't really breathe and he still wants those damn cigarettes. . . . I was angry with the whole situation. I knew he was going to go away from me and I couldn't control this."

She never apologized and neither did he.

A year and a half later, Gemmill wishes she'd been kinder. She questions whether she had a right to be angry with him. But she also recognizes that she was flooded with emotion, that caring for him as he died - as he left her - was the hardest thing she ever did.

"We're human," she said, "and it was a human reaction and I think perhaps we need to be a little kinder with ourselves."

Amen.

After my husband was diagnosed with brain cancer in 2007 and died last year, friends who have been caregivers have confided stories like this, and I've told them myself. We're sheepish about our weakness, guilty that we didn't live up to some Hallmark-movie-standard of saintly caregiver behavior. We think everyone else is always patient and loving, but I've now heard these tales from enough people to suspect just the opposite. This is one more aspect of how Americans die that we're too squeamish to reveal, so we end up feeling bad about behaving like normal, flawed, frightened, exhausted human beings.

Patience has never been one of my strengths. Having two sons made me better at it, but I still struggled with living with a man who was slowly losing his ability to think, feel, and navigate normally. While I worked, I took care of the house and kids, and gradually added all of his duties to mine. It felt like time was slowing down for him and speeding up for me.