By Liza Mundy
Sunday, March 9, 2008
SHE MIGHT HAVE SEEN A SHIMMER ON THE WATER, OR SOMETHING ELSE COULD HAVE TRIGGERED HER REACTION. All Dave Kendall knew was that one minute he was sitting in the stern of his fishing boat, steering, during an excursion on the Occoquan Reservoir about a decade ago. The next minute Diana, his wife of more than 20 years, had fallen from her seat near the bow. She was on the floor of the boat, limbs flailing in what looked like a violent seizure.
Diana had had fainting spells before, but doctors had not determined the cause. They didn't this time, either. Yet there were other things that now seemed wrong with Diana: She was having bizarre reactions to music, which made her head hurt so acutely that she would sometimes bolt out of church. One day, she came home from work at Fort Belvoir saying she no longer remembered how to use Excel. Dave, giving her a refresher session, saw that she was losing her focus.
And she was gaining weight. Diana, who had always been trim and active, began eating junk food and sitting for days, crying. Dave took her to more doctors, including a neurologist who said he wanted to run a test for something called Huntington's disease. He didn't tell them much about it -- just that they had better hope the test came back negative.
Dave felt reasonably optimistic while they were waiting for the results. Doing some Internet research, he learned that Huntington's is a hereditary disorder, and they didn't know of anyone in Diana's family who had it. The life the Kendalls had built together -- decades of hard work that had allowed them to leave behind impoverished childhoods in rural Virginia for the middle-class comforts of suburban Washington -- felt secure.
But when they returned to the neurologist on August 6, 2000, they learned that the future wasn't secure at all. The test had come back positive. "This is really bad news, isn't it?" asked Diana, turning to Dave. She was strikingly calm and dry-eyed. It was the beginning of a transformation in her; deterioration, yes, but also acceptance and what can only be described as grace. It was also the moment -- Dave realizes in retrospect -- when she entrusted herself to his care. It was the end of married life as they had known it, the beginning of marriage in an entirely new form. Same contract, radically altered circumstances. "She put her life in my hands," he says.
Diana was 48; Dave was 51. By then, they had been living with a fatal neurodegenerative disease for several years. Parts of Diana's brain were dying, an inexorable process caused by a single abnormal gene, a glitch that affects everything: thought, mood, movement. After
the diagnosis, Dave began keeping a journal to record Diana's rapid decline.
"She was unable to walk in grocery store to complete shopping -- sat on bench," he wrote in December 2001, adding, "I start peeling apples, potatoes, etc., to avoid accidents with knives."
In February 2002: "Walks like a drunk -- falls against wall."
In August 2002: "Cannot find hymn number in book. Leans while sitting."
In October 2003: "Cannot put her shoes on" and "could not get out of chair."
In April 2005: "Could not subtract 6 from 1977."
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.
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.
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.
"I have to pee," she tells Dave, who has come to the doorway. In another corner of the family room is a hospital bed, and between the bed and the recliner is a portable standing toilet. She uses the bathroom there, rather than the downstairs half-bath. In 2007, an entry in Dave's journal said, "I have no more strength (patience) to get her to the bathroom."
Dave, who stands nearly 6 feet tall, fit from a life of hunting, fishing, canoeing and bicycling, has figured out a way to lift Diana safely. First, he puts one foot between her two feet to keep them both centered. Then he embraces her and hoists until she is standing. "Turn!" he says, and, "Face me" and, "Put your hands in my belt." With Dave walking backward, Diana follows him. Sometimes, he will get her to take a lap around the floor to give her exercise. Now he gets her settled on the toilet.
"You can sit there and tell me when you're done," he says. Sometimes she has the urge to urinate but her muscles cannot accomplish it right away, so he has learned to leave her on the seat.
He goes back into the kitchen and continues preparing their meal, singing to a CD of Tennessee Ernie Ford and chatting with a surprising amount of cheer. He's always tired, but today more than usual: Diana woke him last night, calling to him over the monitor by her bed. After he helped her to the toilet, she went back to sleep while he lay awake upstairs until the alarm rang at 5. He got up, fixed her medications, unloaded the dishwasher. Then he went to work and arrived home in time to help the aide give Diana a sponge bath.
Now he's pushing a rolling cart from the refrigerator to the kitchen island. The cart makes meal preparation more efficient. They're having honey-baked ham, a staple because it's easy and Diana likes it. He heats some canned potatoes, sprinkles salt and pepper on them, assembles a salad, gets out a loaf of bread he bought at Costco, and puts plates and utensils on the cart.
And now Diana is calling to him from the other room, saying she is done. "I've had a bowel movement, too," she says, which is good news, much better than the constipation sometimes caused by her medications. One Christmas, Diana suffered a bowel obstruction, an experience Dave never wants to live through again. He keeps a chart of all bowel movements now and increases her laxatives when necessary. He hoists Diana up, straightens her clothes, walks her, belly to belly, over to the recliner. "I told her this is the first time we've ever danced," he jokes. "Didn't I, Diana?"
"Yep," says Diana, who used to tell him he was chronically unromantic.
"Thanks," she says when she is sitting. She thanks him all the time, when he is helping her down the stairs, or bathing her, or putting on her pajamas.
"You're welcome," says Dave, adding, after a moment: "These are things I never thought I'd get thanked for. She's been more thankful about more things than I would have been. Sometimes I'll be curt with her, and she'll thank me. How bad is that on your conscience?"
"Ha!" cackles Diana.
"I shouldn't be telling you that," says Dave. "Now she'll always be thanking me."
Before long, she has the opportunity to return the joke. It takes him longer than usual to get dinner, and when he asks if she's ready, she suggests, "Why don't we wait a couple hours?"
Dave laughs, transfers her to the wheelchair and pushes her into the kitchen. He rolls up the ham slices so she can pick them up with her fingers. At one point, she slyly tries to pluck a cookie from a plate on the table. But there is plastic over the plate, and she pokes at it futilely. He gives her one, but no more. Once, a soft-hearted aide put a bag of cookies near her, and she ate half of them. "I enjoyed it," she says, and it emerges that she can still wink.
Over dinner, Dave talks about how he has tried to come to terms with their predicament. "For a while, you can get into an unfair thing. You see people my age, and their wives are beautiful and vibrant, and I'm pushing a wheelchair." Or a friend will ask him to go fishing, and he will have to make sure he is home by 5, when the aide leaves.
Raised a Christian by devoutly religious parents, he's found that faith helps stave off self-pity. He studied the Book of Job, drawing some comfort from the story of a righteous man afflicted with suffering. "And I read Ecclesiastes. That's the one that says that all [human life] is vanity." It's helped, a little, in steeling himself to the possible loss of a '65 Fastback. He has tried to see their ordeal as a lesson in not getting attached to the things of this Earth. "If I love any one thing so much that it's going to make me distraught that I lost it, then I'm less stable."
He and Diana used to have discussions like this one. Now, Diana cannot follow complex reasoning. For example, when I ask her what her remaining pleasures are, she draws a blank. "That's too complex a thought," Dave says. They used to study Bible passages and debate their meaning, but now he just reads passages to her. To keep her mind active, Dave will play bingo with her slowly, or ask her to calculate three plus three.
"Life is really kind of crazy, and you have to individually put meaning into it," he says. "How do you explain all the things in life that exist, and make sense of things, if you don't have perspective? What do you think, Diana?"
"I agree," she says.
"I see people who can plan normal lives, and I look at them, and they have freedom to get around and have good health. It's a blessing. What do you think? Diana?"
"I agree," she says.
"You don't have to agree," Dave tells her. "What do you think when you look around? When you're in your recliner, and I'm not home, what do you think?"
"It's God's way," says Diana.
"A little bit unfair?" Dave prods.
"Yes," says Diana.
"Do you feel humiliated?"
"Yep," says Diana.
He fixes her a salad and pours some
Vidalia onion dressing on it. Spearing a potato on a fork, he teases her. "I think
Diana at one time wished that I'd be romantic and give her bonbons. And now I'm feeding her like this."
THEY USED TO HAVE CONSIDERABLY MORE VIGOROUS EXCHANGES. Early in their marriage, Dave told Diana there was nothing he wouldn't talk about, no marital topic that was taboo. "I wanted to be as open and forthright as I could, and Diana got that way, too. She would sometimes come up to me and say, 'We're going to talk,' and I would always talk . . . I don't know of any issue we haven't beaten to death."
"We argued!" Diana calls from the other room.
"I called it debating," retorts Dave.
It's daytime. Dave is in the living room talking about their life together, and Diana is in her recliner, immobile but avidly listening, sometimes correcting his version.
They met in 1968, when Dave was 20. They both were living in small communities in the Shenandoah Valley, near Harrisonburg, Va. His father worked variously as a tenant farmer and in a factory, jobs that never produced much income. "My parents were always poor; they still are poor, and I always said I'm not going to be poor again," says Dave. But they were devoted. "I love every moment with him," Dave's mother tells him, referring to his father, who has begun to display signs of dementia. Dave absorbed his ideas about marriage from their mutual love and integrity.
The only boy out of four siblings, he was, his sisters say, adored, as well as meticulous, smart and driven. After high school, he started putting himself through Blue Ridge Community College with a job slaughtering turkeys in a poultry plant. Diana was 17, just out of high school. She came to Sunday service one day with her mother. She was brown-haired, slender, attractive, except that her hands were nicked and swollen. She was working at a factory, too, cutting livers and hearts out of chickens. "She was always so dead tired, she was no fun to date," says Dave, who nevertheless saw something he gravitated toward. When he asked around, people said she was a good person. Like him, she didn't smoke or drink. "She knew some wild people," Dave says, "and didn't act that way."
A year into their relationship, Dave was drafted and asked Diana to marry him. To him, marriage -- even engagement -- meant total commitment. They both knew girls whose fiances were shipped off to Vietnam and who broke off the engagement or fooled around. "I asked her at that time, can you deal with me being gone and be faithful? Can you be true?" says Dave. "I asked Diana if she wanted to make that commitment, and she said she would."
But it was harder for her than for him. Dave was sent to Texas and Colorado, where he trained as a medic and, later, was given a job as a clerk assisting at courts martial. He found the work interesting and meaningful. Diana was working in a pants factory, sewing zippers. Dave wrote her often and called her every Saturday. She would complain that all her friends were dating, while she had to sit home with her parents after work. She wanted to know if she could date, casually, Dave says. "She would say, 'This guy asked me; we'll go out together and won't develop a relationship,' and I said that doesn't work."
Dave started to back away, writing more distant letters, until Diana reminded him that they were getting married. And they did on May 8, 1971: in a country church, with the usual vows, Diana wearing a beautiful dress she'd paid for. She paid for the wedding, too, because Dave was more intent on saving money than on having a ceremony. She didn't mind, she interjects from her recliner, "not as long as I got him."
After his military service ended, Dave became a fanatical saver. Sitting Diana down, he pointed out that they had no college degrees, no money, no possessions except furniture, for which they were making monthly payments. "We need to make a plan," he told her.
Fearing the only jobs available to him in their area would be menial, he moved them to the Washington area, managed an insurance office and attended night classes at George Mason University on the GI Bill. After he got a degree in finance, he was hired by what was then the Defense Mapping Agency as a management analyst. Diana worked as a government stenographer, eventually becoming a well-regarded secretary in the Office of the Secretary of the Army. At the outset, he insisted they live on her tiny salary and save his. After just two years, they had saved enough to buy a house in North Arlington. He started working on a master's degree in business administration.
Dave insisted they put off having children until they were on a sound financial footing. In 1977, to their great pleasure, they had a daughter. But Diana, who adored children, was unable to conceive another child. It was a source of intense unhappiness until one day she announced: "I'm going to be glad and accept whatever God gives me in my life, and I'm happy and thankful to have one healthy child." To Dave, this was a powerful moment and preparation for the massive act of acceptance that Huntington's would demand.
Her other great desire was to stay home with their daughter. "Couldn't afford to!" she calls from the other room. But when Dave rose to a GS-13, Diana argued that they could live on his salary. By then, they had moved to a more expensive house in Annandale. After a long discussion, Diana won.
"Looking back, it's the best thing she did," Dave allows now. Diana, who loved being at home, was a Girl Scout leader and soccer mom. "They were very devoted . . . and committed," says their daughter, who declined to be identified and who is now married and visits often. While not overtly affectionate -- their daughter still teasingly calls Dave a "Vulcan," because he is so pragmatic and unemotional -- the Kendalls had a strong and humorous marriage. Diana was wickedly funny and would give him a hard time for his meticulous, left-brain nature.
They rarely took vacations, just weekend camping trips or canoe floats. "Diana and I are incompatible in a whole lot of things," says Dave. He liked the outdoors; Diana liked to stay inside and read. But they shared basic values: fidelity and a commitment to their families. When their daughter was old enough to start college, Diana went back to work to help pay for it. And that's when married life, as they knew it, ceased to exist.
SITTING AT THE KITCHEN TABLE, DIANA OBEDIENTLY TAKES AN ARSENAL OF PILLS, which Dave arranges in plastic containers. She's on Depakote to prevent seizures, Risperdal to control chorea and Seroquel, an antipsychotic that also helps suppress involuntary movements. For depression, she takes Wellbutrin and Celexa; Neurontin for anxiety; Concerta for apathy. And in a special box are the tablets Dave calls "my ace." When Diana is having a panic attack, a dose of Klonopin will put her to sleep. Diana can no longer swallow pills with water, so she takes them in applesauce. Being so heavily medicated does have side effects: constipation, stiffness, trembling hands. But they both agree that the drugs offer essential relief and comfort.
"You don't mind your hands shaking?" he asks her. "Not at all," says Diana.
At first, she did resist. Immediately after her diagnosis, Diana's chief symptoms were psychiatric, though there were already some physical signs of the disease. Her depression was acute; she also suffered from panic attacks and anxiety. Sometimes she would appear to be having a seizure and would come running to Dave, who would grasp her face and urge her to focus on his features. She would suffer from internal itching and beg him to rub her, which he would until sweat was pouring off him. At night, her legs would thrash until neither of them could stand it. In the morning, she was often too depressed to get up.
Exhausted and bewildered, Dave joined a Huntington's support group, went online, visited chat rooms. He learned that he could be dealing with a patient who is angry and depressed, possibly impatient and agitated, maybe aggressive. One woman's husband was so violent that police had to Taser him. Another woman had cared for a very difficult husband for decades and was broken by it. "This is what I cannot become," Dave thought. He told Diana that if they were to survive as a couple, they both had to make concessions. "The thing you can do is co-operate. I'm going to do all I can, but if you don't cooperate, we're not going to make it."
It was the beginning of a shift in the domestic balance of power. The neurologist recommended seeing a psychiatrist, but Diana, overwhelmed by depression and apathy, at first refused to go. Dave called her from work one day not long after her diagnosis and told her he was coming home and taking her. "She said, 'Please, do not do this to me,'" says Dave, who replied that he had no choice.
By then, Dave was keeping a careful record of Diana's daily moods and medications. A good day, when she was cheerful and energetic, got a 5 rating; on a 1 day, she cried incessantly and called him at the office to come home and keep her company.
"I've never seen anybody doing this. You're either a lawyer or an accountant," the psychiatrist told Dave after looking at the chart. Dave replied, "I'm just surviving."
It took two years to get his wife stable. Some nights Diana's thrashing and wakefulness were so bad that Dave would sit on the landing of the stairway, desperately reading medical literature and wondering what he could give her to settle her down. Diana, trusting him, began taking whatever medication he suggested. "I guarantee you, she would be in a nursing home" if she hadn't, says Dave. "I could not keep that up."
But even as Diana was becoming emotionally stabilized, the physical decline continued. She started walking unsteadily and falling. By 2002, she had gone on disability and stopped working. Her balance got so bad that she started going up and down the stairs on her bottom. One day, he came home and found her "in her recliner, defeated." She had gone outside on the deck to water flowers and fallen down the stairs. She didn't remember how she'd gotten back inside. Dave went outside and saw a pool of blood at the bottom of the steps. Another time, she fell while vacuuming and loosened a tooth that had to be extracted. Diana loved her house, and she loved cleaning it, but Dave told her she had to stop. "I will now do all vacuuming," he wrote in the journal.
More and more, he found himself issuing orders. When the stairs became too daunting, Dave told Diana they had to put a hospital bed downstairs. She didn't want her home filled with medical equipment, but he insisted.
"Was I ugly?" he asks her now.
"Yes," she tells him, tartly.
As early as 2002, her psychiatrist mentioned the word "abulia," which is the inability to fully understand the severity of one's condition. Dave could see this setting in. Thanks to abulia, or religious faith, or meds, or all three, Diana felt, as she put it, "at peace." He started calling her "Lady Di," not just because he had to wait on her, but because she was so gracious. She would tell him all the time that she loved him. She called Dave's mother to ask if she loved Dave's father. She asked everybody in his family if they loved their spouse. Dave's sisters started asking each other: Do you love your husband? "It's become a family joke," Dave says.
In thinking about love, Dave thought a lot about marriage. For years, he had studied Ephesians, in which Paul somewhat problematically describes marriage, saying, "Wives, submit to your own husbands, as to the Lord." His sisters found this directive sexist, but Dave argued that it does not, in fact, give the man the upper hand.
"I think people misinterpret it," he says. "It talks about the woman being submissive to the man, but it also talks about the husband loving his wife as much as Christ loves the church. The man should give his life for his wife. It talks about how you should leave your mom and dad and cleave to your spouse." It is this idea, of marriage as a mutual cleaving, that sustains him.
"If I didn't have that as a core value, I don't know what would keep me fighting the battle. Without something that gives me some higher reason, I would probably lose a lot of the strength that I have."
Love alone, he thinks, wouldn't be enough to keep him committed to Diana. He likes to argue this point with their daughter, who feels that she's witnessing a different, more transcendental love. "Being a woman," she says, "you think of your knight in shining armor, and you think of all these dreamy metaphors growing up. But you start to learn a different principle of love when you see this -- that marriage goes beyond fairy tale love."
A DO-IT-YOURSELFER BY NATURE, DAVE HAS APPLIED HIS CONSIDERABLE IN-GENUITY TO TAKING CARE OF DIANA.
When it became difficult for her aides to lift her, he bought a motorized lift and installed the track for the lift in the family room ceiling, diagonally, from corner to corner. Hanging from the brackets is a hammock-like sling that the aides wrap around Diana; once she is secure, they engage the motor, lift and move her through the air, like Peter Pan or Tarzan. Dave sometimes makes jungle whoops when he puts her in it. And when he started buying Diana's clothes, he had to familiarize himself with the fine distinctions among under-garments: slips, half-slips, bras.
"I was spending way too much time in the lingerie section," Dave says, laughing. He wanted her to look somewhat dressy when they had company, but pantyhose were unworkable -- too hard to get on and off. He tried knee-highs, but when she sat, wearing one of the brightly colored jumpers he likes to buy her, there was a gap below her hem. So, he started scouting in lingerie sections until he discovered thigh-highs: the very thing.
As he says this, he is kneeling at Diana's feet, inching the thigh-highs up her legs after one of her great remaining pleasures, a shower. To get her upstairs for the shower, Dave has to put a special belt around Diana's waist, get behind her, grasp the belt, support her weight and talk her up the steps. He maneuvers her into the tub, where she sits on a chair while the aide, Mary, soaps her and washes Diana's hair. Afterward, Mary dries her hair and puts it in a terry cloth turban.
"And now I will show you a quick and easy bun," Dave declares. When his wife's hair started falling out from the medication, he wondered how he could keep her looking nice. He got some scrunchies and bobby pins. Taking Diana's hair out of the turban, he brushes it, gathers it into a pony tail and winds it around the scrunchie, which gives the bun more heft and body. Then he pins it in and puts another scrunchie around the bun, to match what she is wearing. "It gives her a little self-esteem," he says.
"I love it," says Diana.
"I could get a job at the Hair Cuttery," he jokes.
For all of this, Diana has thanked him. She has tried hard to find meaning in her suffering. Friends and neighbors say that she is an inspiration. "I am convinced that people have a higher opinion of Diana now than when she was well," Dave says. "I find it sometimes a burden, but not a week goes by that I don't reevaluate myself and ask, Am I respecting her enough? Sometimes . . . I fuss at her, and that's bad of me."
Dave says he misses the lively give-and-take he and Diana used to share. But what he misses most is time to himself. "Basically every minute of my time is spoken for." He has also had to adjust to the loss of physical intimacy that is the inevitable result of such an illness. "You transition into a parent-and-child relationship," he says, and begin to think of your spouse as helpless and dependent. He made the decision early on to ignore that loss. Just as he wouldn't let Diana date years ago, he won't permit it of himself, either.
"You can have huge arguments about that," he says, and he's not judging others. But he also believes that an outside relationship would be "easier said than done." To have an affair but continue to care for your wife: "How would you do that, and what kind of state are you going to leave her in?" And if someone in his situation were to divorce and remarry, would the new spouse let you divide your time equally? He doesn't doubt there are some people who could make it work. "But it would have to be thought through carefully . . . If you start having a relationship, are you just emotionally going to have the relationship, but one that doesn't go anywhere? Just stay in dating mode?"
"I wouldn't do it," he says, even if Diana told him to. "I want to be guilt-free when I finish this thing." He tries not to dwell on what he's giving up. "The last thing a caregiver needs is to start looking over the fence. How unhappy do you want to make yourself?"
And so, for companionship, Dave has the computer chat rooms, family, co-workers. He retired last year but returned to his workplace part time. He often lunches with two longtime colleagues, Debra Hosey and Janice Tapajcik, whom he used to supervise. Over lunch, both women speculate on whether they could do for their husbands what Dave is doing for his wife. Deb, it emerges, had to: Her husband suffered a stroke that immobilized his right side. He has recovered some, but not all, of his mobility. Until she was obliged to care for him, she says, "I didn't know I could do it."
Janice, listening, wonders if her husband would permit her to do what Dave is doing. He is not Diana, she points out.
"Diana was not Diana, either," laughs Dave.
They also discuss something Dave thinks about a lot: Would he have married Diana if he had known what he was in for? People at risk for Huntington's can now take a genetic test. If the test had existed 30 years ago, and Diana had taken it, and it was positive, "Would you have married Diana?" asks Janice.
Not if he'd known before they started dating, Dave says. But if he'd found out a year into their relationship, he believes he still would have married her. Thinking about it, he's glad he didn't know. He would not have had the Mustang restored, or rebuilt the kitchen, or taken any risk. "I might have quit living."
A different hypothetical is introduced at a Well Spouse Association support group meeting that Dave attends one evening. What if the situation were reversed? What if the well spouses were the ill ones? Would their mates take care of them? One man recounts a conversation he had with his acutely suffering wife, who is often cranky and rarely thanks him. Once, when he was taking care of her, he commented that she would do the same for him. "I don't know," she told him.
Dave listens sympathetically. Later, he asks Diana if she would care for him.
"I would try to," she says.
It is evening; they are home, talking about their uncertain future. Diana could live 10 years, three years, one. Choking is a common cause of death for Huntington's patients. Diana has told Dave that if her throat closes up to the point that she cannot swallow, she does not want a feeding tube. That would mean Dave would have to stand by while his wife starved to death. "That would be a heck of a thing to live through," says Dave. But if he was certain that's what Diana wanted, he thinks he could do it. Sometimes when Diana is asleep, Dave will watch her to assure himself that she is breathing.
FOR NOW, IT'S CLEAR TO DAVE THAT DIANA IS BETTER OFF WITH HIM THAN IN A NURSING HOME. He believes that no aide, no matter how attentive, would be as obsessively meticulous as he is, arranging and rearranging a heat lamp during her sponge baths to keep her warm.
Plus, there is comfort and companionship for her in Annandale. One day, they have relatives over to celebrate several family birthdays, and everybody sits at a long table to play "catchphrase," a charades-like game that involves getting teammates to guess a word. The teams are divided by sex. Diana can no longer think swiftly enough to play, so they put her at the head of the table to rule on disputes. Once, when she rules in favor of the women, Dave tries to get her to reconsider. "Who's going to brush your teeth tonight?" he asks.
"You are!" she tells him.
"If Dave won't brush her teeth, Jo and I will do it!" says Dave's sister Pam. Jo, another sister, agrees.
"What time do you want to be here?" Dave asks them. "You want to come back around 10?"
"I'll do it before I leave!" Pam tells him, and everybody laughs, including Diana.
But it is harder to know what will be best for Diana -- for both of them -- as she deteriorates. And she will. Dave sees it every day. Just recently she told him she was becoming afraid to go up the steps, much as she loves her shower.
In Dave's experience, Huntington's is uncommon enough that many nursing homes are not familiar with it. And then there's the cost: Dave and Diana have a modest long-term care insurance policy, which is paying for the home aide. He has $200,000 left on that policy, enough for about five years of a home aide (unless Diana needs 24-hour care, in which case the policy would be much more quickly depleted) or for two years of a nursing home. After the insurance runs out, he will have to start spending his savings and liquidating his assets, until he is down to one car, one house, his government pension and $100,000 in savings, at which point Medicaid will step in to pay for institutional care. He is considering building a first-floor master bedroom, to keep Diana at home as long as possible. They could install a shower that she could be wheeled into.
But what if she gets too infirm? Diana has given him permission to decide when he can't care for her any longer. And so, one day, he hires Mary for extra hours and takes the train to Manhattan to visit Terence Cardinal Cooke Health Care Center, one of the country's few nursing homes with a dedicated Huntington's unit. He wants to see what good institutional care for Huntington's looks like and what the end stages of the disease look like, too.
"At what point am I not capable of providing expert care?" he asks the staff members, who are glad to meet with him. Part of the center's mission is to raise awareness about care for people with Huntington's.
The center's medical director, Anthony Lechich, assures Dave that he can keep Diana at home "forever," if he is inclined. "Just looking at you, I read someone who wants to go the distance," he tells Dave. "You are a very sweet man."
Dave gets a tour of the unit, which houses about 55 Huntington's patients of various ages. Many are in late stages, with severe chorea or rigidity or both. Some are sitting up and drinking; some are almost skeletal. He stops in front of one woman whose husband brings her home every Sunday to see their dogs. He asks her how she likes it at the center. "It's not home," she says, with difficulty. "But it's okay."
In another bedroom is a woman in her 60s who has been here since 1989. She is immobile and apparently unaware, rigid in a wheelchair, making "uh, uh, uh" noises. The image drives home how long a patient can live with this disease. "It's hard to comprehend Diana in that condition," he says. It's also hard to think about what his own life might be like 10 years from now.
But the trip crystallizes some decisions. Riding back, he says he is impressed with the facility and thinks a nursing home might someday be necessary. But, for now, he will build the first-floor bedroom and keep his wife home.
He calls Diana from the train. While Dave was gone, Mary got her up at 10 a.m. Diana had her meals, sat at the table, watched the birds flying around the feeders that he keeps filled for her. "Rate your day on a scale of one to 10," Dave says. He often asks her to do this, and she usually offers a high number. She rates today a 10.
Sixteen hours after he left, he walks through the front door, and Diana, waiting for him, gaily says: "Welcome home!"
Liza Mundy is a staff writer for the Magazine. She can be reached at firstname.lastname@example.org. She and Dave Kendall will be fielding questions and comments about this article Monday at noon.