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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Divorce rates are high in marriages where one spouse is severely injured or chronically ill. Adults suffering from a chronic progressive disease such as multiple sclerosis are 60 percent more likely to be divorced than adults who are healthy. "There's an awful lot of spouses -- age 45, 50, 55 -- who say this isn't what I had in mind for this period of my life," says Kelly Thompson, an Arlington attorney who represents people with disabilities and their caregivers, including Dave. In some cases, the ill spouse becomes abusive, verbally or physically. "He is mean-spirited, angry, obnoxious, undependable, moody," lamented one wife, venting in a chat room on the Well Spouse Association Web site.

In other cases, the absence of physical intimacy and social companionship becomes unbearable for the healthy spouse. On Well Spouse chat rooms, there are scores of anguished postings from lonely wives and husbands, wondering what constitutes betrayal and what doesn't.

"I really miss flirting and touching and sex," posted one wife, who found herself having "an emotional affair" with a co-worker and feeling bad about it.

"Don't feel guilty about your feelings, but be very, very careful with this guy," another poster urged.

Others say things like, "It's become so lonely for me I feel like I'm single again," or, "As I head into my 15th straight year of celibacy . . ." Still others decide that fidelity, in these extreme circumstances, does not require celibacy. One poster, declaring that he needed an outside relationship, had found one.

"When I met my new close friend and realized I had deep feelings for her, it made no difference in my love for my wife," he said, prompting a string of commentary on how much the ill spouse deserves, or needs, to know. Confessing an affair is the best thing, some ventured, while others warned that doing so could make the ill spouse feel inadequate or abandoned. No one accused this husband of betrayal, but one poster wondered whether an underlying purpose of confession might be to secure a tacit permission from the helpless spouse.

Sometimes, well spouses turn to each other. "We're not a dating agency; we don't do matches," says Anderson, "but it happens." Other times, divorce occurs in name only for the sake of financial survival. In spousal caregiving, unlike care for a parent, the marital assets are vulnerable. Nursing homes run some $100,000 a year, a daytime home health aide $40,000. Most health insurance does not cover extended caregiving, such as bathing and feeding, and Medicaid doesn't cover it until the household is officially impoverished. "Someone in Dave's position could lose [much of] his retirement savings," says Thompson. The better care he takes of Diana, the more likely he is to run through his assets, an irony of which he is acutely aware.

But Dave, a workforce planner for the National Geospatial-Intelligence Agency, has no intention of divorcing Diana, regardless of the emotional and financial cost. "I believe you're married to death," says Dave, who lies in bed wondering which vehicle he should sell to pay for Diana's care when it comes down to that: the truck he uses for brief day trips to hunt, or his 1965 Mustang Fastback, one of the few luxury purchases he has ever made. These are questions he confronts without input from the very person to whom he might normally have turned for consultation: his wife.

"DAVID!"

It's a word he hears a lot: his name, uttered in Diana's sharp staccato. The abruptness is not intentional. The illness has affected Diana's throat muscles, and she has trouble articulating words. Dave is fixing dinner, and Diana is calling to him from their family room, where she is sitting in a recliner designed for people with Huntington's.

Huntington's affects an estimated one in 10,000; more than 250,000 Americans have it or are at risk of having inherited the gene, according to the Huntington's Disease Society of America. "I'm biased, but I think it's the worst disease on Earth," says Dave, who has seen his wife "taken apart, piece by piece by piece." Its effects, which usually emerge when people are in their 30s or 40s, are psychiatric, cognitive and physical. One signature symptom is involuntary movement known as chorea. In Diana's case, the chorea mostly affects her legs but can show up elsewhere. "She bites her tongue up to 10 times a day," says a 2005 entry in Dave's journal.

Beside the recliner is an end table on which rests a portrait of Diana as a 19-year-old bride, slender and smiling. She weighs about 170 pounds now, and her hair is gray and thin from all her medications.