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The Secret Caregivers

Men care for their loved ones more often than we know. Why do they hide it?

The Secret Caregivers

— Illustration by Mutt Ink

Hope died in 2005, and two years later Victor still feels an undertow of loss after those last, intimate years with his mother. "I miss it, even the hard stuff," he says. "It's all valuable."

Years spent caring for a spouse can be heartbreakingly difficult—particularly for men who aren't used to cooking, shopping, and cleaning—but they can also be among the richest and most precious. That was the case for Karl Eigsti.

The head of the theater design program at Brandeis University, Karl lived with his wife, Berkeley Bottjer, in Lincoln, Massachusetts. In March 2000, Berkeley was diagnosed with squamous cell anal cancer at age 53. "It's pretty dire," says Karl, now 71.

Karl tackled the next two years of treatment like a second job. "I got to know Mass General [Hospital] like the back of my hand," he recalls. "I was always with her for the bone scans and operations, then I went home to take care of the dogs and the house."

That December, Berkeley's oncologist determined that her cancer was incurable and gave her an impossible choice: extend her life with sickening chemotherapy or live no more than six months without it. "That was a tough bullet to take," says Karl, but his wife made a clearheaded decision. She didn't want to be shuttled between hospital and home to have chemicals injected into her body; she wanted to spend every day fulfilling her deepest desires. "I want to get as far away from Mass General as I can," she told her husband. It was her idea to buy an RV so the couple and their two springer spaniels could make a trip across the country.

"We camped out every night for 40 nights," Karl recalls proudly. "I cooked every meal. I'd open up an awning and put out a carpet. We had wine and gourmet dinners. We watched a full moon come up over the mountains in Yellowstone, with our glasses of wine."

The high point was a pilgrimage to a remote island to visit Karl's aunt and uncle. The Eigstis clambered into a four-seater plane with their dogs and flew off the coast of Washington State. There they were welcomed by a community of 20 multigenerational families living off the electric grid, with a generator providing enough power to enjoy the Metropolitan Opera on Saturdays. Karl's aunt, also living with cancer, happily cooked the catch of the day on a wood stove. Berkeley told Karl it had been the best day of her life.

On their return drive, winding through the glaciers of the Canadian Rockies on a brilliant morning, Karl remembers Berkeley saying, "On this trip, I've forgotten I was sick."

When caring for a loved one, that may be the most precious gift any of us can hope to give.

Gail Sheehy was AARP's Caregiving Ambassador in 2009. Her latest book, Passages in Caregiving, comes out in May.

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