PHOTOS BY CHRIS KELLY staff Above: Lorraine Bifulco (center), Long Branch, takes part in “One Night, One Light,” a candlelight vigil marking Alzheimer’s Disease Awareness Day held at Kensington Court Assisted Living in Tinton Falls on Nov. 3. Below: Nancy Massa, whose mother has Alzheimer’s disease, displays a photo of her parents during the vigil. It is better to light a candle, than to curse the darkness, according to a Chinese proverb, and that wisdom was reflected in a candlelight vigils held throughout the state on Nov. 3 in recognition of Alzheimer’s Disease Awareness Month.
Vigils were held simultaneously at eight locations throughout the state, including at the Kensington Court, an assisted living community in Tinton Falls, according to Leena Shah, coordinator of public policy for the Greater New Jersey Chapter of the Alzheimer’s Association.
“We had three last year,” she said in an interview last week, and we hope to build to have one in every town in New Jersey.”
Last year, Gov. Jon Corzine designated Nov. 3 as New Jersey’s Alzheimer’s Disease Awareness Day, and this year on that date, dozens of people attended the candlelight vigil at Kensington Court.
“We want to raise awareness and shed a light on all the families of those affected by Alzheimer’s,” Shah said. “More and more people are being diagnosed, in our state and in our country.”
Shah said more people are being diagnosed with Alzheimer’s because there is more awareness and people are getting diagnosed earlier.
Alzheimer’s is a progressive disease that can affect memory, and can lead to physical and mental deterioration, and, at the late stages of the disease, can be fatal, according to Anne Pagnoni, spokeswoman for Kensington Court.
“The vigil is an effort to build a greater awareness of the disease in New Jersey,” Pagnoni said in an interview last week. “We would like to unify all of the people in New Jersey impacted by it.”
She said that a conservative estimate is that 150,000 people in New Jersey are living with Alzheimer’s disease, and that including one caregiver for each patient, 300,000 New Jersey residents in the state are impacted by the disease.
Geanna Merola, Ocean Grove, is a parttime caregiver, assisting her father and siblings in the ongoing care her mother has needed since 2001, when the first signs of Alzheimer’s began to appear.
“In 2001,” said Merola in an interview last week, “my mother started stumbling over her words. Then we spent years consulting with neurologists before she was diagnosed with Alzheimer’s.”
Merola said that because there are so many different ways for Alzheimer’s disease to appear, each patient is different.
“Some people lose their memory,” she said. “It’s different in everyone. My mother has completely lost her ability to communicate. She can’t speak. She can’t read, write or understand what we’re saying. As the disease progresses, it’s harder and harder to engage her in activities she used to love.
Pagnoni said that in the United States, 5.2 million Americans have Alzheimer’s and that the babyboomer generation is expected to see double that many diagnosed.
“More people are living to a greater age,” she said. “The important thing to remember is to get help. Don’t feel like you have to do this all on your own. There are support groups everywhere for caregivers for people with the disease. Find out your options.”
Merola visits her parents during the week, helping feed her mother breakfast before bathing and dressing her.
“The hardest part,” she said, “is that everything is hard. It’s hard to watch someone you love go through this. It’s hard to fit everything in. I am lucky to have a very supportive family, and my father has been a big hero. I have two sisters who live closer to my parents and we all do what we can. You learn about strength you never knew you had.
“My father’s advice is the best: Meet each challenge as best you can, and that has to be enough. My advice for people is to not be afraid of the information. Learn as much as you can as soon as you can. And don’t lose your sense of humor entirely. You have to find a sense of normalcy in your day. It is really difficult, and it really is a struggle, but it is life, and life doesn’t go as planned.”