When Harry Jackson was younger, he was a skilled electrician and craftsman who built and repaired a variety of machines. The work was both his livelihood and pleasure. He was according to his family, convivial and gregarious.
Today, he is a fragile and silent man who sits quietly on his sofa and watches daytime television programs. A victim of Alzheimer's disease, he bears little resemblance to the person described by those who knew him in other days.
But Jackson remains an important part of his family, whose members are struggling to permit him to pass his remaining days with grace and dignity.
Alzheimer's disease is an irreversible and untreatable disorder that causes a gradual loss of intellectual and physical capabilities, according to Dr. Robert Butler of the National Institute on Aging. In its final stages, the patient may become unable to recognize anyone -- including himself. s
Alzheimer's is "one form of what was once called senility," said Butler, who added that while the disease is always fatal, death is almost never swift.
He estimates that nearly half the patients in nursing homes in the United States are victims of Alzheimer's.
And, then there are the people like Harry Jackson, whose families want to care for them at home. Bessie Jackson, his wife of 40 years, and their daughter and son-in-law, Joanne and Ron Yelenik, say they did not consider any other alternative from the beginning of Jackson's illness. Although Mrs. Jackson and the Yeleniks do not regret their decision, they have discovered that it is a grueling one to live with.
Jackson, who is in his mid-70s, lost the ability to speak nearly six years ago, and must have help with nearly all routine, day-to-day activities.
Health care experts agree that home care is less costly than institutional care, but say there is little public aid available to families like the Jacksons who want to nurse sick and aging relatives at home.
"I am amazed," said Mrs. Jackson. "I could get all kinds of help if I wanted to put him away. But for the most logical thing here, for keeping him in familiar surroundings where he is loved, there is not a penny."
"I'm so angry," she continued. "You hear a lot of talk about keeping your loved ones at home, but basically, I think that doctors, agencies, and governments are very insensitive to the whole thing.
"When Harry began to be really ill, the first thing they would ask me was if I had made any plans. What they meant was, had I thought about putting him in a nursing home. Listen, this is a man I've loved and lived with for 40 years, and I expect to do more for him than stuff him into the corner of some institution at the time when he needs me most."
Mrs. Jackson has sought help from the Montgomery County Department of Social Services, hoping for the aid of a homemaker for six or eight hours each day. Such help would free her for routine chores outside the home and for a partial return to a life of her own, she said. The department has provided a homemaker who helps out two hours a day on two days each week.
While her daughter Joanne says that Mrs. Jackson is "almost inordinately grateful for any help that she gets," the four hours a week are not enough. She lives an exhausting and sad life, watching her husband fade away, and passing the time without friends, without diversion, and without laughter.
"We knew a lot of people back in New York," said Mrs. Jackson, who moved to Rockville two years ago to be near her daughter. "I have met some very nice people here. But I can't go out, and, with a few exceptions, people can't come in. It's just too depressing for them."
Before a serious decline in his health last month, Jackson attended a day-care program for the elderly offered by Support Center Inc. in Silver Spring. He participated twice a week, for five hours at a time.
The director of Support Center, Jim MacRae, said he is very worried about Mrs. Jackson, because, "she needs all of the help that she can get. Most of the time, she's just exhausted." MacRae acknowledged that "there are only a limited number of services available," and said he believes the county Department of Social Services "is probably doing all that it can right now."
Jack Hiland, associate director of the department, said that a maximum of 20 hours of service weekly is "the best we could ever do" is a case such as the Jacksons'.He said a lack of manpower, rather than lack of funds, is the problem.
"It's ironic," said Hiland. "We're one of the wealthiest little communities around, and we still can't get it together to get the services."
The Jacksons live on a fixed income, and although they have managed to pay the staggering medical bills that have accumulated over the years, Mrs. Jackson said she cannot afford to hire someone to take care of her husband eight hours a day.
Nancy L. Mace, center coordinator of the Alzheimer's disease association of Maryland at Johns Hopkins University said that home support systems are underfunded even though they are significantly less expensive than the cost of care in institutions.
"Funding for home care of the sick and elderly is just not a politically attractive issue and there is not enough public recognition or awareness of the problem," she said.
Mace said some form of assistance is crucial for families who care for Alzheimer's victims at home because "some life of one's own is a serious issue here. Some of these people just never leave the house. In essence, they've really lost their partner, but the whole process of grieving has to be delayed, because although he's gone, he isn't dead."
The association, which was formed last fall, has four main goals; patient care, family support, research and education. Mace says that more support for at-home care can only come with increased public awareness that what was once dismissed as "senility" often is a serious physical problem.
Dr. Mathew Taybeck, director of the Maryland Office on Aging, believes that "the public ought to be willing to give more support to families who want to take on the burden of caring for their elderly at home. If that support is not equal, it should at least approach what we're willing to give to institutions."
Taybeck cited the newly developed Family Assistance Demonstration Program as one way the state is trying to help families who care for the elderly at home.
Using a complex formula to determine the difference between the care a family can afford, and the actual cost of the care required, the state has set up a system of payments. The maximum amount a family can receive in one year is $2,000.
But even if this pilot program -- currently covering 40 Maryland families, 13 of them in Montgomery County -- is a success, its restrictions will exclude Bessie Jackson and others like her from assistance. Family, as the program's regulations define it, does not include the sick person's spouse.
Taybeck admits that this is ludicrous, but said, "The public policy notion remains that it is the duty of the spouse to provide such care. Perhaps as this notion and public awareness evolve, the rules can be changed." p
It may already be too late for Bessie and Henry Jackson. Recently, Mr. Jackson fell in his apartment and suffered a broken hip. He is hospitalized and according to his doctor, Allen Mondzac, learning to walk again will be "an excruciating, if not impossible" task for him.
Mondzac believes that patients like Jackson receive better care at home -- if they have the kind of dedicated family that Jackson has.
But now, he said, Mrs. Jackson may be forced to consider a nursing home, because the physical burden of caring for her husband in his present condition "is simply too much for any one, two or three people."