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Date: 11/14/2023
PELHAM — Many people think of Alzheimer’s as a heartrending death sentence. Nick Kachulis found the disease enabled his dad to have special moments with him, to leave special gifts for his son before he passed away.
“My dad was … from the World War II generation, which typically meant he didn’t express those intimate feelings very much,” Kachulis said. “When he moved in with us, one of the blessings of dementia was the filter was off. I heard ‘I love you’ from my father more times in the last four years than I probably had in the last 60.”
The poignant memories, the pleasures and hard challenges of living with a parent suffering from Alzheimer’s — and the final loss of his dad — pushed Kachulis, a musician and writer, to stage a public celebration of Bill, his father. The hour-long performance of songs and stories inspired a community outpouring of support.
Kachulis, deeply gratified by the help from friends, neighbors and local businesses, created a film, Life With Bill, about his father’s last four years, time when he lived with Kachulis, his wife and son at their home in Florence. The performance focused the broad story of a father and son and a fatal disease. A book will soon be published. The story will change lives, he was told, because it shows the joy, love and humor the afflicted may still bring to the family.
The chance for his father to live with the family, age in place rather than in a nursing home or institution, felt proper and correct.
“Having dad in the house was a difficult experience,” Kachulis said. “He was a great gift to us in his last years [but] I also felt, he’s my father. I owe him that. Maybe that’s an unpopular idea, I don’t know.”
A trend toward aging in place, elders remaining with the family until the time of passing, is going mainstream. The choice is being facilitated by new organizations, like Valley Neighbors, that offer help with the many smaller tasks of daily life that seniors find difficult or impossible.
Kachulis told of an elder in the area who couldn’t get an air conditioner into a window. A little help in the spring and fall took care of what seemed like an insurmountable job. A neighbor offered to shovel snow for a senior, a predictable difficulty. The local Council on Aging may have a handyman willing to do small repairs. Rides to grocery stores and medical appointments help the graying to preserve their independence and stay with the family.
Kachulis doesn’t minimize the hardships. The disease lent an unpredictability to Bill’s state of mind. Kachulis and his wife dealt with the changing moods and communication difficulties. Time away from the stress was necessary.
“We have this idea that if somebody’s not productive, they’re not efficient and productive, then how valuable can they be,” Kachulis said. “But … there were times when the whole house shook with laughter because he said something or did something. Some of it he knew he was being funny, some … he didn’t.”
Kachulis captured the bittersweet mix of feelings in a story he placed in a volume of the Chicken Soup for the Soul series of self-help books. The story told of when Kachulis took Bill to see his last baseball game. Local businessman Todd Barron, founder of Applied Mortgage, bought 100 copies of the book to give to those who attended the show.
Barron rented the garden house at Look Park for the performance and video production and supplied refreshments. Two friends performed music. Other friends organized a three camera shoot. George “Shaker” McNeil taught Kachulis how to edit the digital footage.
Changes in Kachulis’ creative work were a surprise dividend from the project. Learning a new creative process, filmmaking, changed his writing and musical compositions. He sees the world a little differently now that he knows when to use a fade and the proper time for a jump cut.
“It was fascinating to just feel the detail of things,” Kachulis said. “How long? Do we want to alter the color of that? Where’s the cut? Do we want a fade in rather than a quick shot? All those details I found very absorbing and very satisfying.”
The film, “Life With Bill: A New Model for Aging,” will be shown at the Pelham Public Library on Nov. 18 at 11 a.m., followed by discussion. A six minute trailer can be found on the project website at nickkachulis.com. To schedule a showing of the film email njkachulis@gmail.com.