A Calamity to the Victim and Family, Alzheimer's Yields Slowly to New Facilities and Medical Science
updated 05/20/1985 AT 01:00 AM EDT
•originally published 05/20/1985 AT 01:00 AM EDT
Leo hesitates, bows his head and replies, "My horses. I've got to feed my horses. I forgot my hat. Have you seen my hat?"
It is an episode that he may repeat 30 times a day. There are, of course, no horses and no corral. But each time the alarm blares, Leo will be retrieved and reassured by one of the attendants.
At 86, this once rugged Texas-born cowboy is among the more than two million Americans who suffer from Alzheimer's disease, a brain disorder that impairs reasoning and the memory of recent events (see box, page 122). Gradually Alzheimer's has destroyed Leo's mind, stranding him in a frightening world where vivid memories from long ago collide with present-day events that he cannot interpret.
As the disease progresses, families of victims grow desperate, and some are torn apart as they watch a loved one hallucinate, forget how to bathe and dress, become incontinent and turn belligerent, even violent. Relief has been hard to come by because many overburdened nursing homes turn Alzheimer's patients away. The ones that do accept them have often resorted to both chemical and physical restraints: heavy medication and cloth strips to hold them in beds or chairs.
Fortunately that approach is changing as the nursing home industry faces up to what may be the nation's fastest-growing health-care problem. Northwest of Tucson, the Desert Life Health Care Center has launched a pioneering program: A secured wing is reserved for 28 people with advanced Alzheimer's. This special-care unit—dubbed by staff members the Blue Ward, for its azure doors and walls—has proved so successful since it opened April 4, 1979 that it is being used as a model for a group of 13 Alzheimer's homes in the West and Midwest.
What makes Desert Life unusual, and successful, is the specialized attention given to patients, the facility's security measures and the wide variety of therapeutic programs aimed at keeping patients happy and connected to reality. Most nursing homes have one activity director for every 100 patients; Desert Life's Alzheimer's unit has one for every 25. Personnel is kept as consistent as possible so that patients are not confused by new faces, and heavy medication is avoided. The end result, says administrator Tom Henry, is that "patients can be their real selves, not drugged zombies."
The first sensation that strikes a visitor to the Blue Ward, for all its advanced facilities, is the pungent odor of fresh urine mixed with disinfectant; among Alzheimer's victims incontinence is common. Next is the color: Expressionist finger paintings in bright yellows, reds and greens line the halls, not unlike a second-grade classroom.
The third impression is the din. The Blue Ward is noisy with the shuffle of shoes and walkers, the nerve-quaking alarms, the flush of toilets and the howls of patients, all commingling with the calming Muzak and incessant beat of radios tuned to rock stations. Strangely, the overall effect is not frightening but almost festive.
Number 612 is Leo Black's room. He has an 8-foot-by-12-foot space with a linoleum floor, single bed and semi-private bathroom. The mustard-colored walls are covered with pictures of his beloved cowboys—riding, roping, smoking Marlboros. A bed shelf holds pictures of Leo's children and grandchildren. By his door is an observation chart that a staff member must initial every 15 minutes to confirm the patient's well-being.
The noise level rises dramatically at 7, when the day shift starts to awaken, groom and feed the patients. Leo stands in his doorway attired in yellow moccasins and hospital smock, his shock of gray hair sticking straight up. "Leo, you look a little like a rooster today," says housekeeper Dena Francis. "Look out," Leo shoots back, "I might begin to crow."
Suddenly there are angry shouts from next door. "Get the hell out of here," screams "Aunt" Peggy, 75. Meanwhile Ada, 84, in her wheelchair in the corridor, picks away at her scrambled eggs and periodically yells, "Hey-up!" while across the hall Charles, 78, clamors, "Whatnow, what-now, whatnow, whatnow?" Staffers are well advised to remember each patient's personality quirks. One former patient used to bite when surprised from behind, and a female aide, who forgot, reached across the woman's shoulder and had her nipple pierced through her hospital uniform.
Leo poses no such threat. "I left my teeth in Texas," he chuckles after breakfast, as nurse's aide Hazel Pierce comes to dress and groom him. "I clean his gums with a wet washcloth," she explains, "give him a little sponge bath and comb his hair." As one of the healthiest patients, Leo often follows aides up and down the corridors, helping push the supply carts. The staff is careful not to discuss patients in front of other patients. "They may or may not understand," says one nurse, "but it's a sign of our respect for individuals."
But there is a lot of tactile contact, hand-holding, hugs and pats during meals. Dorothy, 72, is the neighborhood sweetheart; she will unabashedly halt in front of strangers, close her eyes and pucker up for a kiss. "In the advanced stages of Alzheimer's," one nurse explains, "people lose their inhibitions, and that makes them more openly affectionate."
The ward is full of clues, including bulletin boards, to remind patients where they are, the year and the day. Still, aides do not pressure them to remember because it can lead to agitation and frustration. Familiarity and routine seem to be all that can help keep Alzheimer's victims calm.
Thus the days are filled with low-key activities, including services in an interdenominational chapel, exercise classes to improve coordination, glee club, bingo, movie screenings (favorites are golden oldies like Mr. Smith Goes to Washington) and hairdressing appointments in a beauty shop that is rarely empty. Accompanied by aides, Alzheimer's patients mix with others in the nursing home and sometimes share meals. The Blue Ward baking club makes cookies and brownies; Alzheimer's victims, whose restlessness burns up calories, commonly develop a ferocious sweet tooth.
Leo's favorite activity is the weekly Hiker's Club, with a "hike" consisting of a handful of supervised patients walking up to a mile through the surrounding desert area. Afterward Leo will check into the patients' lounge to watch TV. Often recreational therapist Nancy Stout wanders in, sits down with her guitar and begins to play Moonlight Bay. Gradually patients will gather and sing along. "It's amazing how good their memory for music is," Nancy says, "even when there are few other things they can recall."
As supper approaches and darkness falls, the noise and restlessness increase in the daily phenomenon known in the Blue Ward as "sundowner's syndrome." By 9 o'clock most of the patients have gotten ready for bed but not necessarily for rest. Sleep disturbances are a common symptom of Alzheimer's, and aides must be alert through the night for wanderers, especially when there are storms and lightning.
Leo's life is comparatively tranquil now, but such was not the case when his Alzheimer's started years ago. In fact, the Black family's ordeal actually began in 1976, when Leo's wife of 50 years, Hettie, then 69, began to change. Sensing that her memory was failing, she had reluctantly given up her job as postmistress in Hereford, Ariz. a few years before. Then "suddenly she became messy, dirty and unkempt," recalls her daughter Barbara, 56. Sometimes Hettie would wear several outfits at the same time, one atop another. She tried to pay for groceries with postage stamps, drove recklessly, shoplifted candy bars and got lost between home and the supermarket. She ceased to recognize her children and once panicked because she took Leo for a burglar. The doctors diagnosed her condition as acute senile dementia—a catchall term that includes Alzheimer's—and recommended that she be placed in a nursing home.
Leo vetoed that idea. "He swore up and down that he could take care of her," says son Tom, 50. Leo started a part-time job caring for a few head of cattle on a neighbor's ranch. "He probably could have done it in an hour every couple of days," says Tom, "but he insisted that it was a full-time job. He stayed away all day. He wanted Mom home, but he didn't want to deal with her problem."
Although Leo and Hettie had four children, the burden of their care had fallen on Barbara since the couple had moved into a trailer next door to her home in Amado, Ariz. "I had my own kids to take care of and was driving the school bus to make ends meet," says Barbara, who cooked for her parents during this period and washed their clothes. "I felt a mixture of anger, bewilderment, fear and frustration," she admits. "I didn't know what to do."
Then in February 1980 the Arizona Highway Patrol found Hettie after she had discovered some hidden car keys, taken the car and been sideswiped on Interstate 19—driving south in a northbound lane. "After that, I felt we didn't have any choice," says Barbara. In May 1981 Hettie was admitted to a nursing home in nearby Nogales.
Leo was furious, and for a long time Barbara felt that his angry outbursts directed at her were rooted in resentment. She was not ready to admit that the same tragedy could twice strike her family. But in fact Leo was becoming more and more angry, forgetful and confused. He accused Barbara of stealing and often threatened suicide with his pistol. Physically he remained strong, and therefore dangerous. "He has a way of intimidating you with a raised fist," says Tom, whom Leo once whacked across the back with a two-by-four. Leo's other children tried taking him in. None could handle him.
Again it was a car accident that forced a decision on the family. On New Year's Day 1983 Leo had a minor collision and struck his head. After examining him, doctors told Tom that his father had Alzheimer's. Leo's children first put him in a boarding home. He escaped on his very first night there. A second home refused to keep him because he was "abusive, abrasive and belligerent." He wound up in a hospital mental ward, heavily drugged.
The family was on the brink of despair when they heard about the experimental Alzheimer's program at Desert Life. Leo was admitted in March 1983, after a social worker helped his family juggle his Social Security allowance. Supplemented with a county welfare allocation, there was enough to meet the $45.50 per day for his small private room. (Hettie, still at the home in Nogales, died just two weeks after Leo entered Desert Life, but by then he seemed to have all but forgotten her.)
Initially, Leo menaced the Desert Life staff, kicked out the slats of the security fence, tried to escape and begged his children to take him home. They stood firm, though Tom admits, "It's tough to withstand your father, even after all we'd been through."
Gradually, Leo calmed down as he became accustomed to the routine and the staff. Today he is among the most cheerful of the Blue Ward's residents. Tom visits at least once a month. Leo often recognizes him, if only for a few minutes. Two other children, Pete and Rosie, who live in Yuma, Ariz. and Fresno, Calif., have each come to see him. Barbara, who lives 40 miles away, visits infrequently. "Many of the things—the yelling, the insults, the threats, the accusations—that happened toward the end left me bitter," she says, on the verge of tears. "Besides, when I do visit him, he doesn't recognize me, and it doesn't seem like I can make his life any better. Having somebody you loved get cancer would be easier to deal with."
Leo apparently feels no bitterness. Grudges and resentment cannot exist without memory. Nor does he mourn the passing of the man he once was, for in his mind he has become that ranch hand again, suspended in a time when the range stretched clear to the horizon and, yep, it was time to feed the horses down in the corral again.