When Alzheimer’s disease progresses gradually, as it did with Carol Bucca’s father, Joseph Raby, a spouse will often quietly step in, guiding, taking on additional household tasks. As a result, family and friends may underestimate how far the disease has progressed.
Once her parents moved to Florida in 1985, Bucca, executive director of information technology at Educational Testing Service and recipient of this year’s Circle of Honor Spirit Award from the New Jersey chapter of the Alzheimer’s Association, no longer saw them as regularly as she had when they lived in Palisades Park, New Jersey, her hometown. Some years later, when her mother was suffering from congestive heart failure, either Bucca, her sister in New Jersey, or her brother in Ohio would go down to Florida each month to visit.
During these visits her father, who had been diagnosed with Alzheimer’s in his early 70s, was still driving to the store to do errands for her mother. “She sent him out with shopping lists, and he would come home with some of the stuff,” Bucca says. “He wasn’t doing a lot of reading and was not doing checks.”
But her mother’s support had shielded Bucca and her siblings somewhat from the effects of Alzheimer’s. “She was managing him, and it wasn’t completely obvious to us,” she says.
Her father in fact had still been driving until the weekend of her mother’s sudden death in February 1998, at age 72. Soon after the doctor took away driving privileges from her then 76-year-old father, Bucca says, he started becoming much more confused, which is common. “That happens with Alzheimer’s,” she says. “If you have some sort of event, whether a physical or emotional event, it can accelerate it.”
Her mother’s caregiver had been coming in during the day, but after her death the family had to extend the care to giving him meals and helping him with bathing. About a month after her mother died, the caregiver found him wedged between the toilet and shower because he had fallen during the night, and the family signed on for 24-hour care.
“My sister and I were single parents and working at the time, so we couldn’t take care of him,” says Bucca. Although her father did not immediately need a nursing home, it was clear that soon he would, and they were able to secure a place for him at Greenwood House in Ewing. He was admitted to the general unit in September, 1998.
The disease progressed quickly, Bucca says, and after several years he was transferred to the Alzheimer’s unit, where the ankle bracelets that all residents wear causes the door to lock if a patient approaches it and the staff to patient ratio is four to one.
For Bucca, the possibility of Alzheimer’s is always in the back of her mind. “My grandmother had dementia, my father had Alzheimer’s. I’m scared to death that it will hit me or someone in my family. I want to be proactive in pushing the cause forward,” she says.
The Alzheimer’s Association provides a checklist that can help differentiate between symptoms of the disease and ordinary moments of forgetfulness (see page 35). Bucca offers examples of when the possibility of getting Alzheimer’s jumps into her consciousness: “When you go into the basement to get something and by the time you get down there you’ve forgotten what you went to get, or when you ask the same question again or tell your kids something again because you forgot you already asked.”
As far as any genetic predisposition, however, Bucca says that it may be genetic in some cases, and a study is now ongoing to ascertain this, but it is not genetic in all cases. It also may be affected by diet and exercise. However, early onset Alzheimer’s seems to be more common today. “I was shocked to learn that people in their late 30s or early 40s were stricken with it,” she writes.
Bucca has been volunteering with the Alzheimer’s Association since 2005, when she heard about the annual Walk to End Alzheimer’s. That year, marching with her sister and her son, she raised $4,000. She is now chairperson of the planning committee for the Central Regional Walk to End Alzheimer’s and also captain of the ETS company team, which she created in 2006. Since 2007 her team has been the top fundraiser in the region, raising over $304,000 in the October, 2015 walk.
Bucca explains why her focus is on fundraising. “So many people are dealing with it [Alzheimer’s], so getting the funds and raising awareness to have the government fund research is really important,” she says. The Alzheimer’s Association, she continues, is very instrumental in driving the research agenda, both by advocating for government funding and funding its own research.
Bucca was excited to learn that the recently approved federal government spending bill included a $350 million increase in funding for Alzheimer’s research. According to the Alzheimer’s Association, the funding means that “we will have succeeded together in doubling Alzheimer’s research over the past several years to a level of nearly $1 billion per year.”
The national group noted that “hundreds of our nation’s leading Alzheimer’s researchers have outstanding studies — studies that could yield the missing clues for treatments and care breakthroughs we’ve seen with other diseases — that have been held at the starting block for lack of funding. This increase will allow that work to move forward, bringing us that much closer to improvements in care and treatment, and ultimately an end to this disease.”
Bucca thinks the timing is critical. Noting that the largest growing demographic is 65 and over, fed by the aging baby boomers, she suggests we will be seeing a higher incidence of Alzheimer’s. “If we don’t have an effective cure, it will break the backs of our children and grandchildren,” she says. “Because it happens over such an extended period of time, the cost is greater.”
Bucca advises anyone with questions to call the New Jersey chapter’s 24-hour helpline at 1-800-272-3900, where they can get contact information about support groups as well as doctors and other support systems. People can also visit the websites alzheimers.org and alz.org/nj.
It used to be that doctors did not tell people that they might have dementia or Alzheimer’s, but now they do. “People are not going to realize it themselves,” Bucca says, noting how important it is to raise awareness of the symptoms. When she ran into an old sorority sister, the woman told her that her husband was in hospice care with an end case of Alzheimer’s, but that she hadn’t realized he had Alzheimer’s. “She was getting angry because he couldn’t remember and couldn’t do everyday things,” Bucca says. “It doesn’t occur to people that something is wrong with them.”
Lots of people are seeking information and approach Bucca. Recently someone involved with the walk told Bucca her mother-in-law has Alzheimer’s and asked what the family could do.
Here is what Bucca advises people: “Get diagnosed and see if there is medication that can help slow it.” The Alzheimer’s website includes a tab labeled “research,” linking to TrialMatch, which connects people to clinical trials currently underway.
Bucca’s father was a food salesman, and her mother stayed at home with the kids. Bucca graduated in 1975 from Trenton State College, now the College of New Jersey, with a degree in elementary education and mathematics, although she never taught.
After marrying right out of college, she and her husband moved to Maryland while he served in the U.S. Army. Bucca did data processing and secretarial work for three years, and after they returned to New Jersey she got a job as a secretary in the time-sharing division of Automated Data Processing (ADP). She took some programming classes, and nine months later was able to work as a technical consultant. In 1988 she left ADP as project manager with the network services division and moved to ETS.
Bucca is active in her synagogue, Congregation Beth Chaim in Princeton Junction, where she served on the board for five-and-a-half years and has been singing in the choir since 1992. Bucca lives in Hamilton, as do her daughter and son-in-law, and infant grandchild. Her daughter also works at ETS and her son-in-law is a Hamilton police officer. Her son, a South Brunswick police officer, and her daughter-in-law, a speech therapist, have a five-month-old son.
Bucca’s father died in January, 2006. At Greenwood House, she says, he was one of the better patients in terms of personality. “A lot of times patients with Alzheimer’s get very combative,” she says. “He was the one who protected the nurses, and he always had a pleasant demeanor.” But as the disease progressed, her father was no longer able to recognize his family and lost his ability to execute voluntary movement, meaning he could no longer verbalize or feed himself and was ultimately in a wheelchair.
During the last two years of his life he needed to be fed thickened liquids and pureed food, which carried its own dangers. “At that point he would get aspiration pneumonia because he would inhale food,” she says. “I would go and feed him, and he would be sitting with a blank stare. Occasionally if I got eye contact, I might get a little laugh.”
Her children, who were no longer at home, had not seen their grandfather for a while, and Bucca remembers a visit that was heartbreaking for them. “There’s no quality of life,” she says. “They may be taking things in but nothing comes out. It’s a disease that progresses slowly and is probably worse on the families because they sit and they watch, and they can’t do anything.”
“For so long Alzheimer’s has been under the radar,” Bucca says. “It was never really looked at. Cancer kills, AIDS kills — those are the things that stood out. Alzheimer’s was the quiet one.”
But that is changing. “A lot of people are affected by it now,” says Bucca. “If they are not personally affected, they will be.”