Family's struggles with dementia spur woman to join cause

Tara Arthurs of Kingston knows from personal experience the devastating toll dementia can take on families. She first became aware of the disease as a teenager, when her grandmother, Marie Litchendorf, began acting strange, confusing her parents with other people and wandering away from home.

“One of her neighbors had called my dad and said that my grandmother was wandering the street in her nightgown,” Arthurs recalled. “She would think my dad was his brother, who was deceased like 20 years prior, and she thought my mom was the woman her husband left her for.”

Her grandmother was eventually diagnosed with dementia. Arthurs said it was hard to see the changes in her.

“We were all disheartened,” she recalled. “We knew our grandmother to be independent and strong-willed. Seeing her not be able to take care of herself was hard to take.”

Her grandmother moved into a nursing home, where her memory continued to decline.

“She just started not remembering people at all. She fully stopped talking,” she said. Her grandmother passed away in September 2000 at age 94.

Arthurs’ aunt, Eva Czyzewski, was only 50 when she started forgetting people and acting strange. “My uncle took her to the doctor, and they ran all the tests, and even the doctors were shocked at what they saw with her brain scans,” Arthurs recalled.

Czyzewski was diagnosed with frontotemporal dementia. An outgoing woman who had formerly been active in the community, she had become very quiet and had to have her sister remind her who visiting relatives were. A few years later, she had to be moved into an assisted living facility because she could no longer be left alone.

“She was eating all the time and eating raw meat out of the refrigerator,” Arthurs said, noting this led to a lock being placed on the refrigerator. The tipping point was when she entered a neighbor’s house uninvited. They called the police, but eventually people realized who she was and brought her home.

After battling the disease for 10 years, Czyzewski passed away at age 60.

Arthurs’ father, Henry Litchendorf, is currently living with Parkinson’s-related dementia. He lives in Hurley with his wife, Teresa Litchendorf, who is his primary caregiver. Arthurs said he had multiple medical procedures in his 80s requiring anesthesia, which she thinks affected his brain. After his diagnosis, his independence declined dramatically.

“He couldn’t do anything for himself anymore,” she said. “He couldn’t remember what he had for breakfast or if he had breakfast. He couldn’t remember what he did the day before.”

Arthurs described caregiving as one of the biggest challenges of dementia.

“They can’t take care of themselves anymore. It’s almost like taking care of a child — a child that wants to be independent, but can’t be,” she said.

Arthurs said she and her family attend Alzheimer’s Association support groups, and that it has been helpful for her mother to see she’s not alone. When she learned about the Walk to End Alzheimer’s, she decided to get involved as a way of giving back. This is her second year as co-chair of the Dutchess/Ulster Walk to End Alzheimer’s planning committee.

This year’s Dutchess/Ulster Walk to End Alzheimer’s, set for Saturday, Oct. 17, will be different than previous years. While the event normally draws large crowds to the Walkway Over the Hudson, participants will walk with teams or families at various locations. To register, visit HudsonValley Walks.org.

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.