Caregiver's experience with dementia moves her to take action

Janette Licastrino of Carmel is the mission chair for the Westchester Walk to End Alzheimer’s. She is also a caregiver for her mother, who was diagnosed with Alzheimer’s disease in 2015 and has been living with her since December.

She said signs started becoming apparent in her mother about a year after her retirement in 2011.

“I think 2012 was when we started realizing that she wasn’t herself,” Licastrino said, noting that the changes surfaced in simple things like cooking, shopping habits and cleaning.

“People used to say ‘Your mother makes the best steak.’ Then the food started tasting different — but not only not tasting different — I would get sick. I would go to my mother’s house, and I had to stop eating my mother’s food,” she said.

Eventually the situation progressed to the point where she realized her mother couldn’t continue living on her own.

“I live in Carmel, and she lived in Yonkers, and it was just too much, so I moved her in with me,” Licastrino said, adding that at this point her mother has forgotten many of the basics of daily life and requires constant care.

“She doesn’t know the difference between cold and hot water. She doesn’t know the difference between shampoo and conditioner. People don’t realize how much it takes to care for someone daily who has Alzheimer’s or dementia. It’s a lot; it’s like having a child,” Licastrino said. “She can sit in front of the TV all day and watch the news, and five minutes later, she can’t tell you what she saw.”

While she has an aide to help her with some of the care, the aide doesn’t work every day, and she said has to start her days early to make sure everything is in order.

She said her experience — which includes several other loved ones who are either are currently living with Alzheimer's or who passed away with the disease — drives her to promote support the cause.

"It’s a really hard time, and we need to get more people involved. Every opportunity we get, I tell people what’s going on. Every store I shop in, I ask people if they want to donate.”

Licastrino said she first became aware of the Alzheimer’s Association while working at a previous job when she participated in a co-worker's walk team. Now she has her own walk team, Team Memories.

“I think, in general, the Alzheimer’s Association is a great starting point for anyone who wants to raise money for a heartbreaking disease,” Licastrino said. “A lot of people don’t even know that Alzheimer’s and dementia exist. They think it’s just forgetfulness. I think a lot of people need to get tested and get help. I tell my family all the time that we need to get tested.”

She noted the coronavirus has created challenges in motivating people to get involved.

“Right now, people are very hesitant about committing to anything,” adding that this year’s walk is not like previous years, when a mass gathering was held at a particular location.

“We’re not walking with everyone — we’re walking with our own team,” Licastrino said. “You can go out on your deck and walk a few steps.”

The 2020 Westchester Walk to End Alzheimer’s will be held on Sunday, Oct. 4. That day, participants can tune into a virtual opening ceremony at 10 a.m. before heading out to walk at the location of their choice. A mobile phone app will be available to provide encouragement and interaction during the trek. To register or make a donation, visit WestchesterWalk.org.

About the Walk to End Alzheimer’s

Held annually in more than 600 communities nationwide, the Alzheimer's Association’s Walk to End Alzheimer’s® is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research.

About the Hudson Valley Chapter

The Hudson Valley Chapter serves families living with dementia in seven counties in New York, including Duchess, Orange, Putnam, Rockland, Sullivan, Ulster, and Westchester. To learn more about the programs and services offered locally, visit alz.org/hudsonvalley.

About the Alzheimer’s Association

The Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Its vision is a world without Alzheimer’s and all dementia. Visit alz.org.