The Vow

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The Caretaker

Through the exhausting trials of Huntington's disease, a Northern Virginia couple finds meaning in their marriage.

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In November 2005: "This is the first Thanksgiving in which I had to spoon feed her."

In May 2007: "Di has no ability to read anything or create a thought. I do it and ask her if she likes the thought."

More than seven years after Dave began keeping his journal, Diana has lost her balance and her ability to stand unaided. She can count forward from one to 10, but not backward from 10 to one. She is immune to boredom and has no sense of the passage of time. Yet she is still capable of teasing Dave, as well as expressing a deep appreciation of what her disease has cost her husband. Three years ago, he asked her what her New Year's resolutions were. "To read my Bible more," she said, "and to be less of a burden to you."

Dave, now 59, recalls this on a clear day in mid-winter. He is sitting at a table in the airy, immaculate kitchen he built for Diana. The kitchen was supposed to be something they would enjoy together. But by the time the cooktop and cabinets were installed, Diana's illness was too far along for her to really use it. "I would have liked just to clean it," she will sometimes say, wistfully, her speech choppy and hard-won, her words articulated with labor.

Diana is at the table with Dave, sitting in an electric-blue wheelchair, drinking water through a straw -- swallowing is so difficult that she makes clicking sounds as she drinks -- and watching through the Palladian window as a pileated woodpecker pecks its way around a maple tree in spirals.

On a computer bulletin board recently, Dave heard of a woman who lived 30 years with Huntington's. By the end, she weighed 44 pounds. It is an illness that can have a very long trajectory: 10 to 20 years is the estimated life-span after diagnosis, but there is no way to know. The better care Dave takes of Diana -- and he takes very good care of her -- the longer she will live. The longer she lives, the longer he has to live like this: Waking in the night to take Diana to the toilet or settle her after an anxiety episode. Getting up early to prepare her medications and make her breakfast, then rushing home from work to fix them both dinner. Feeding Diana, cleaning Diana, hoisting Diana up and down the stairs. Never taking vacations. Going to weddings and other events by himself. Sleeping alone. And sleeping little.

He is taking the ultimate test of marital commitment in the modern medical era.

IN THE PAST SEVERAL DECADES, SOMETHING KNOWN AS "FAMILY CAREGIVING" HAS ENTERED THE AMERICAN LEXICON. As the baby boom generation has moved into late middle age, some 44 million adults find themselves caring for an ill family member, usually an elderly parent. Caregivers are now a constituency. They have Web sites, support groups, alliances, lobbying organizations. With good reason: Family caregivers provide billions of dollars in uncompensated health care for some of the country's most chronically ill citizens. Within this group is a subset, an estimated 14 million who are caregivers for their spouses. Most are aging wives and husbands taking care of older or sicker mates. But some, such as Dave Kendall, are caring for spouses at a far younger age than would be reasonably expected.

Theirs, of course, is not an entirely new predicament. There have always been wives and husbands who went to bed, as the saying went, and never got up. What's different, now, is that people with serious injuries and degenerative conditions tend to live longer than in past eras. For their spouses, this can be a blessing -- the person you love is still alive and with you -- and a prolonged challenge.

"It used to be that people got ill and died," says Richard Anderson, president of a small but growing group called the Well Spouse Association. Many of its 1,500 members are in their 40s and 50s. They are taking care of spouses suffering from traumatic brain injury, paralysis, stroke, cancer, multiple sclerosis or early onset Alzheimer's. Anderson's first wife was diagnosed with scleroderma, a hardening of the skin that paralyzed her digestive system, when they were both 30. With the help of an IV line and medication, she lived for 29 years.

Now, people get ill and -- survive. And their spouses face a series of dilemmas that boil down to: Was this really what I signed on for?

These are vows you "made when you are 20, 21, and you don't know what's going to happen," says Carol Levine, a medical ethicist who cared for her husband for 17 years after a car accident left him cognitively impaired and immobile.